Earlier this year, I put together a project proposal for a fellowship application for a study tour. I’m very sad to tell you that my application was not successful this time, but there has been a lot of interest and excitement in the project.
I have just shared a run down of the project on my personal blog. I will update of any developments through this newsletter. 🙂
Project Aim (ie my goal)
To explore the in intersections between mental illness, mental injury, and identity, through the experiences and understandings of the Multiple community.
This is a highly diverse community including those formally diagnosed with Dissociative Identity Disorder DID (formerly Multiple Personality Disorder), those who self-identify as experiencing multiplicity, and those with different frameworks and understandings such as spiritual possession. People’s experiences range from severe mental illness, poverty, and impairment, to multi-millionaires and founding directors of organisations. It is the perfect community for exploring how diversity and suffering intersect.
Why is Multiplicity an identity – even a ‘super power’ for some, but a catastrophic disorder for others? What role does diagnosis, self-identification, the way we name and frame difference and suffering, and social visibility play in people’s capacity to function? Multiples have a great deal to teach us about the way we approach the human condition, especially diversity, suffering, freedom, visibility, and identity.
Massively misunderstood, stigmatised, under-resourced, and mis-diagnosed, the Multiple community is largely invisible and difficult for researchers to access. I was diagnosed with DID in 2007 but have since recovered: I no longer meet the diagnostic criteria around impairment or distress but still live as a Multiple. I founded the Dissociative Initiative, an international project, and am out about my multiplicity in my public blog, personal, and professional life. I have rare access to this community and deep insight into the challenges, opportunities, and diversity within it.
I identify as multiple myself, (learn more about me here) and apart from maintaining this network, I’m also a consultant.
I’m currently contracting with the South Australian Mental Health Commission who are wanting input from as many South Australians as possible to create the new Mental Health Strategic Plan. We would love to reach out to other people who experience multiplicity, dissociation, or amnesia, and our friends, families, allies, and professional supporters and make sure you are included!
There’s many ways South Australians can get involved, from this quick and simple online survey to a facilitated creative group or special event. It can be group or individual, totally independent or I can set up something special. All South Australians are invited to take part,
I’d love to hear from folks about the best ways to approach this. I’m currently working with the Pride of the South folks creating a fantastic, free IDAHOBIT day event (International Day against homophobia hate and discrimination for gender, sexuality, and bodily diverse people) and a little corner of my brain is thinking – how amazing would a chance to meet like that be for our community! I’d be happy to host an afternoon tea or chance to meet online if that’s easier. What do you think?
Reach out to me at firstname.lastname@example.org or 0401 099 174
Or directly to the SA Mental Health Commission on email@example.com or 1300 293 220
We are fortunate to have so many things going on, the network continues to grow and this newsletter takes longer to compile each month!
At this stage we do not have enough available and interested people to form a board, so this network is continuing to be supported privately by Sarah and funded through her face painting business. Discussions are ongoing. You are welcome to make a contribution to costs too!
Our New Resources
There are now 2 face to face groups for people who experience dissociation, multiplicity, or amnesia: in Victoria, Echoes Yarra and Echoes Preston! This is a very exciting development. More details in Support Groups.
We now have our postcards advertising the DI in print again! These cost around $35 for 100 when printed on recycled paper or $25 otherwise. If you would like any, please contact Sarah, if you’re able to contribute at all to the printing costs that would be fantastic but ask for some to hand out anyway even if you can’t. Donations towards print costs can be made through my personal blog: https://skreece.wordpress.com/donate/ Please be sure to clearly let me know you want it used for the DI postcards. 🙂
Some of us in the DI may recall assisting Noel Hunter, a clinical psychology doctoral student in New York City, USA. From the end of last year until the early part of 2015, she conducted interviews with individuals from Australia and across the United States who identify with the diagnosis of dissociative identity disorder. The goal was to try to understand what aspects of treatment people have found to be helpful and/or harmful. Both her extensive analysis of the literature spanning the last century and results of these interviews serve to challenge the modern-day accepted practices of conceptualizing people’s problems in living as “disease” and then treating them in an authoritarian manner that extends from this “broken” perspective. Individuals respond to trauma and chronically stressful life experiences in a myriad of complex ways, and few people can be treated respectfully and helpfully based on a reductionistic and disempowering conceptualization. She hopes more than anything to show how the creative and sometimes destructive ways that people adapt to trauma and distress can be overcome or even used to lead a productive and satisfying life. People recover every day. She is one of those people. Currently, the dissertation is in its final stages of completion, and will hopefully be defended and available by the end of the year. Noel also writes a blog related to the topic of dissociation, psychosis and trauma at www.madinamerica.com.
Sarah has recently attended the ISPS conference and was excited to note that some therapies are being adjusted for voice hearers. I’m interested in the possibility of adapting these for people with multiplicity too. If the video below isn’t working for you, view it directly on youtube here.
Sarah’s Psychosis without Destruction Talk was also recently delivered in Adelaide and very well received! I am currently in discussions with many other organisations about giving talks on the same topic or about dissociation or multiplicity around Australia – in some cases I’m waiving my fee completely and just asking for help to cover travel expenses, so please get in touch if you would like me to come and speak at your organisation or group. More about my talks can be found on my website: http://sarahkreece.com.au/mental-health/
Suzanne is working on her documentary about Multiplicity. She’s offered us an update: “In the last couple of weeks I’ve talked to five very different people about their lives and experiences with DID and Multiplicity. Three are in Australia and two in the US. I’ve then spent a lot of hours transcribing the audio and just absorbing what they’ve all said. Transcribing is incredibly tedious, but necessary is so you can find the sentence you want far more quickly than listening through lots of audio trying to remember exactly where its located!! I’ve done this before. It’s quicker to transcribe.
Both the similarities and differences of everyone’s stories are amazing and I’m now in the process of working out how to structure them into a documentary. At them moment I feel like I have a pile of jewels and I need to figure out how to thread them in the right order. I’ve written a rough first draft and it’ll be interesting to see how different the final draft might end up being. I’ll be going to Sydney next weekend along with the other eleven people making documentaries, and we’ll spend an intense weekend of face to face learning and workshopping about sound and voice and effects and recording and microphones and who knows what else. I’m really looking forward to it. Tonight, my son Dave, who is going to write some music and create some sound effects is coming to visit, and we’ll see what a first draft, and some combined creativity can generate.”
Suzanne is currently in Sydney and will keep us updated!
Events & Opportunities
There’s a new study through Towson University, looking into whether people with dissociative disorders find a web-based intervention, in combination with individual psychotherapy is more effective. The TOP DD Network study is a year-long web-based educational program for patients with dissociative disorders and their therapists. To be eligible, patients must:
be 18 or older and able to understand written and spoken English at the 8th grade level
commit to doing approximately 2 ½ hours of work per week including: watching short educational videos (between 5-15 minutes each week), completing weekly writing exercises, and practising skills exercises each day;
be diagnosed with Dissociative Identity Disorder or Dissociative Disorder Not Otherwise Specified/Other Specified Dissociative Disorder
be in treatment with a therapist who is willing to also participate by watching the videos and completing surveys
have been working with their therapist for at least 3 months
therapists can only participate with one of their dissociative clients
Enrolment in the study is now open. Click on the link for more information on their website, or send an email to the Principle Investigator Bethany Brand, Ph.D. at TOPDD@towson.edu.
The International Society for the Study of Trauma and Dissociation have their Aus/NZ regional conference coming up on 27th – 29th of November in Sydney, Aust. The ISSTD Conference title is “Broken Structures, Broken Selves: Complex Trauma in the 21st Century”. Registrations are currently open.
Some DI members will recall Anna Van, who interviewed some of us for an article. The article has been published through The Quarry. Identity, Fractured, Anna Van. Anna hastens to apologise for “the errors and/or lack of depth. I feel a little bit embarrassed!!” but thanks us all for our help and involvement. Interactions with anyone in the media around multiplicity can be fraught and require a lot of courage on the part of us who live with it, and a lot of open-mindedness and willingness to listen on the part of those in the media – so cudos all round! Every non-sensational/hostile/voyeuristic bit of media out there is a good thing.
It’s been a busy and productive couple of months, and we have some really exciting news!
We have been very fortunate and will be having our first major contact with the media this year! Not just any media, but media which is friendly to our cause and informed about our experiences. Earlier this year we asked for calls for interest in helping us to create a documentary about Multiplicity and people were really keen. Well, the amazing has happened – Suzanne’s documentary about Multiplicity won one of only 12 places in the highly competetive annual Community Broadcasting Association series! It will be aired nationally around Australia and made available as a Podcast for everyone. We’re over the moon! See these links for more information, and read a call for contacts in Suzanne’s own words below:
My name is Suzanne Reece, and I’m Sarah’s mum. I work in community radio and have just been granted a place in this year’s Community Broadcasting Association in their Australia’s National Features and Documentary Series. This is where twelve radio producers across Australia are trained and mentored to produce a documentary for national broadcast. I want to make a documentary about Multiplicity – from the inside. I’m not officially DID, as there are certain things within the official criteria that don’t apply to me. However I very much self-identify as Multiple and have functioned as a ‘collection of selves’ from as far back as I can remember. It always felt normal to me. This is an opportunity for Multiples to tell their stories in their own words, and have those storied treated with understanding, sensitivity and respect. This is a place to say that Multiplicity does not always have to be paired with ‘disorder’. This is an opportunity for the Multiple community to speak about what’s important to them, rather than be explained and defined by other people. I’m hoping that many of you would like to add your voices, your experiences and some of your selves to this documentary. I’m able to disguise voices if that’s important to any of you to protect your anonymity. I’m also able to take your words and have them read by a voice actor if that’s important to any of you.
Please email me at firstname.lastname@example.org if you’d like to be part of this amazing opportunity.
DI Board and Structure
We have been meeting with interested people about the future of the DI, and drawing inspiration from a number of books and models of small scale social entrepreneurship. We have made links to existing networks such as Community Health Onkaparinga. No incorporation has happened as we are still finding solutions to the problems of a board of keen but very busy people with many existing commitments in their work. Please do not be concerned about this – if we cannot bring together the support to start a board, we will instead continue for now as a part of Sarah’s business. In that case we’ll be unable to seek grant money and will need to raise funds through other means, but the ‘freeze’ on projects will be lifted either way very soon and people can get involved with supporting the existing resources and helping develop more. 🙂
Our members are a creative bunch and often find their own ways to reach out and fill some of the gaps in the resources for and about multiplicity. Jade is one who has recently published 2 books. She is also a volunteer admin for our Online Discussion Group! Here’s a little more about her:
Jade Miller is a blogger, artist, SRA survivor, and member of a poly- fragmented DID system. She desires to bring education and awareness about the reality of SRA/DID to the public and increase the number and availability of resources to survivors for healing. Jade has experienced a very diverse life, from living on an agriculturally oriented farm to an inner city apartment to brief homelessness in her more turbulent younger years. She has been in various hospitals and treatment centers for a wide variety of mental health diagnoses since the age of 12 and is now, as an adult, living from a place of continually increasing health and joy. She wishes to use her experiences to help other people who struggle. She wrote Dear Little Ones to help young alters understand Dissociative Identity Disorder, and she wrote Pieces of Me as a more personal look into her healing journey.
The busy people at the UniSA Department of Rural Health in partnership with the PIR program are putting together a conference called Walk the Talk of service integration. It will be on the 25 & 26 June, in Pt Lincoln SA. Contact Sarah or watch this space for more details.
UniSA Department of Rural Health is also running a set of workshops about voice hearing called Hearing Voices that are Distressing – a simulated training program. It will be on the 23-24 and the 29-30 June at UniSA Whyalla Campus. There are a few subsidized places available for people with lived experience or peer workers on low incomes.
Sarah will be at all of these events and would love to touch base and catch up with any DI friends there! 🙂
Finish with a Quote
I believe in the power of laughter and tears as an antidote to hatred and terror – Charles Chaplin
Gatherings and discussions are continuing about growing the HVNSA from a network supported by Sarah’s personal business, to one run by a board. This may or may not include the DI as well, depending on key decisions that will be made over the following weeks. For your information, following is the message that has just been sent out to the HVNSA via that newsletter; requests for involvement and opinions apply equally to you!
There is widespread interest in our developing HVNSA network and many people keen to come on board with projects the fit their skills and passion. There has been a general agreement to hold the development of the projects off until we have settled on our new structure. Those who are interested in being part of this process, please reach out! If you are more interested in being part of projects as they develop – be patient, let us know what you are keen to contribute to, and they will start as soon as we have a structure in place to support them. You can, of course, be interested in both!
We have a number of key decisions to make. Currently the HVNSA is part of Sarah K Reece’s private business. We are looking at incorporating and making it a not for profit. We are also considering the relationship between the HVNSA and the Dissociative Initiative (DI) – a sister network founded on the same principles, but for people who experience dissociation, multiplicity, or amnesia.
One of the challenges facing us is the potential conflict between organisational heirachy and structure, and the friendship and community based values of the Hearing Voices Movement. Another is the vulnerability of funding and the need to sustain the structure through times of little or no financial support.
We have three basic options when it comes to incorporating:
Incorporate either the DI or the HVNSA, and run the other as a project of it
Incorporate only the HVNSA and retain the DI as a network supported by Sarah’s business
Incorporate a body distinct from both, committed to the principles of the HVM such as teaming ‘experts by training’ and ‘experts by experience’ together, encouraging diverse understandings of experiences and so on (for more please see our page About the Hearing Voices Movement Approach) but applying them broadly to any experiences, not just voices. (To read the HVN values articulated for the DI, please see our page Our Values) This body could then run both the DI and HVN as distinct but connected networks – and possibly expand to include other experiences down the track.
We are still seeking advice as to our legal requirements with regards to Board structure and responsibilities, one suggestion to help the organisation as a whole function despite funding gaps and so on has been to create a very small, permanent board of committed (pun intended!) people who are able to support the projects and record and preserve the work accomplished in them through the website and printed materials and so on. Others with a passion for the networks but perhaps less free time or more challenging health or life situations could be linked in as advisers to the board or as managers or team members of the specific projects they have a passion for. An upside of this approach is that it is very stable, a downside is that it can create a closed clique.
We are keenly exploring different models in an attempt to create an organic, efficient, community structure and we welcome your input!
I’d love to hear your feedback, criticism, or suggestions with these resources, particularly if you have personal experience or care about someone who does. If you don’t have access to a printer, please remember I am more than happy to print and post our free Welcome Pack to you, or other pages. All the website is public content, please print, share, email as you wish. Let’s get the word out there!
We also have an opportunity to put the board back together and restore the DI to function as a Not For Profit organisation. There is currently a group of people here in South Australia who wish to grow and develop the Hearing Voices Network of SA (the other free network I support through my business). We are considering several options, one of which is to dovetail the DI and the HVNSA together and use these people to rebuild the board and relaunch the DI, creating projects and resources for both. There are some pros and cons with this possibility and I would like to hear your thoughts! Here are a couple of the benefits and risks as I see them:
Similar Values & Resources: The DI has always been developed from the Hearing Voices Movement approach. It’s behind our values of diversity and peer based resources, collaboration between experts by experience and experts by training, and a focus on plain language information and access to groups. So the DI and the HVN overlap considerably in values, structure, and resources, they’re just directed towards specific experiences. Keeping the networks separate doubles the workload in building resources such as phone in support, or professional referral directories, and in raising awareness about who we are and the work we do. In fact when we wrote the DI constitution we specifically included the possibility of supporting people who hear voices or have other ‘psychotic’ experiences.
More Support & Reach: Due to so many of our members being closeted because of the severe consequences of stigma, most of the public and many of those in mental health are unaware of how many people are needing support with experiences of multiplicity or dissociation, or how severely people are affected by this huge gap in services. The Hearing Voices Movement is international and widely established! This is a massive network of people to share resources and support with, who are interested in hearing and learning about us. They have an international conference every year, a presence in the media, and research to provide evidence for their approaches. They also already have people with dissociation or multiplicity in their hearing voices groups – and we could help them to provide a language and meet the specific needs of these members. That could make a massive difference in the lives of hundreds or thousands of people – far more reach than a local multiplicity and dissociation support group here in South Australia.
More Funding Opportunities: As a Not for Profit we can organise our own funds and proritise the projects that are most urgent or achievable. We can grow much more than if we stay a part of my personal business, and we can seek out grant opportunities to fund resources.
Mixing up Different Experiences: Some of us, especially those who find the clinical models such as Dissociative Identity Disorder and Schizophrenia useful may be distressed by linking services of both areas together because we are often tired and frustrated by how poorly understand both of these conditions are and how frequently they are mixed up!
Losing Focus: All the people currently interested in becoming part of the DI have come from a background of passion for the Hearing Voices Movement. It’s possible that linking the DI and HVNSA together could see the DI aspect fall aside if those involved are inexperienced or simply lacking awareness of the need for dissociation and multiplicity resources. The DI aims could be overshadowed. (Obviously, not while I’m around!)
Different Areas: The DI has national and to some extent international focus, while the HVNSA is a specificly state based project. This could cause conflicts in aims and projects.
Different Needs: While some people’s experiences of dissociation, multiplicity, voice hearing, or other ‘psychotic’ experiences overlap, others do not. The two communities are not identical. In some ways they have very different experiences and needs. For example, while some people with ‘psychotic’ experiences struggle with forced treatment and hospitalisation, people with multiplicity are more likely to report being treated badly because of their ‘attention seeking behaviour’ and even being exited from services or hospital while in crisis because someone doesn’t believe that multiplicity exists. Spokespeople and resources would need to be sensitive to these differences!
What are your thoughts? We all together are are the DI, I want you to know what’s going on and have a voice in decisions that may impact you.
If you would like to learn more about the HVNSA, proposed projects which could include those of us with multiplicity or dissociation, and the plans being developed there, please check out the latest newsletter over on the sister site: Hearing Voices Network: New Projects and Plans
In other news – some food for thought from our Facebook Group:
A last word from me for the year – thank you to all of you who have been part of this network! It has been wonderful to get to share in your year, the highs and lows, to make new friends and walk alongside old ones. A special shout out to Shelley and Jade who spent a lot of time on the DI facebook discussion group, sharing and welcoming people.
Merry Christmas to those of you who celebrate it! Especially for those us who struggle at this time of year due to trauma, loneliness, family stress, and poverty, I hope you can find some peace and hope. If not, I hope you can keep your heads down and hide out until it’s over for another year. My thoughts are with you. We are a caring and generous community that I feel deeply privileged to be part of. I’ve bought a couple of gifts that have been given in your name if you wish. We give so much to each other and in a small way are also helping to make the world a safer place for kids, and to help them communicate.
I hope each of you are able to find ways to meet these needs in yourselves and your own communities. Much love, Sarah xx
The Hearing Voices Network of SA has been garnering a great deal of interest lately, due to a visit from Ron Coleman to discuss voice hearing and a network with staff from a number of local organisations. I have arranged a number of meets to gather support and get new projects off the ground – there’s more detail on the HVNSA newsletters here and here. It’s fantastic to be part of an existing model with international groups and support!
Of course, at the DI we don’t have that so much. We use the same models but for different experiences. It’s my hope that the interest generated by the HVN will also lead to more awareness of and support for the DI. So please, if you’re interested in being part of this – reach out. Send me an email email@example.com and lets catch up online or face to face. We are looking at getting a professional referral directory happening for the HVN, the same would be fantastic for people at the DI.
I am involved in a couple of free forums coming up:
Hearing Voices: the reality of a person’s experience Presented by Matt Ball with Sarah K Reece
Wednesday 10th Dec (following a meetup)
11am – 12.30pm Mifsa Panangga, 64 Elgin Avenue, Christies Beach Flyer with details
Making Christmas Easier Presented by Sarah K Reece
Tuesday 16th Dec
1.30pm – 3pm
Mifsa, 5 Cooke Terrace, Wayville Flyer with details This is not specific to people with trauma/dissociation/amnesia/multiplicity, but will be tailored to whoever is there on the day as a workshop around whatever concerns people have. A meetup will be held afterwards if people are interested.
The Online Discussion Group continues to grow, we currently have over 700 profiles linked in. We recently had some big conversations about safety and diversity and how to manage triggers. One suggestion born out of that was to develop some resources around calming distressed parts and coping with feeling triggered – if anyone would like to contribute to such a project, please let me know.
Noel Hunter is a graduate student at Long Island University, doing research into treatments for DID and voice hearing as part of her dissertation. She would love to hear from people who meet the criteria listed here.
You are well and truly due an update with what’s going on at the Dissociative Initiative. 🙂 Bad news first – after our incorporation I’ve been unsuccessful in keeping our board together. Some challenges with a primarily ‘lived experience’ board have been that none of us had ever been on a board or involved in the development of a Not-for-Profit Org before, and as people’s situations changed they’ve either moved onto other exciting and time consuming projects (like having babies!) or experienced a rough patch in their personal lives that needs their time and focus for now. So, without a board, I’m (Sarah) holding the space and keeping the DI ticking along. After many months of uncertainty – where to from here? – I’ve found a way forwards.
I’ve been running a small business as a face painter and artist in Adelaide for several years, and I’m currently adding my mental health peer work to the portfolio of services I offer. I’ll be continuing to provide training and educational talks about all things dissociation and multiplicity related as well as much broader topics – sexuality, psychosis, trauma recovery, cupcake decorating… 😉 but as a freelance consultant rather than employee or volunteer. What this means is that I’m supporting the DI to continue to exist as a community network offering free resources, funded by my business. I am also developing two other free networks, the SA branch of the Hearing Voices Network, and Homeless Care SA.
Our SA group Bridges is still suspended due to pressures on my time, but all our other resources are still running, such as the online discussion group and free Welcome Packs. I would greatly appreciate any support from people interested in this field or who have been helped by the DI to develop further resources such as a professional referral directory – if you have a little time please get in touch, you do not need live locally. Mental health staff, people with lived experience, and family and friends are all welcome to be involved. 🙂
I have been developing and updating our website at di.org.au, adding new information pages. Feedback and suggestions about what would be helpful would be very welcome!
Lastly, some food for thought from our online group: